My daughter Rumi was born in March 2020 – only a week after lockdown in NYC. We moved to New Jersey a few months later and quickly noticed that she wasn’t hitting any of her major milestones. Shortly after her 4-month pediatrician’s visit, we began our early intervention journey. She began with PT, OT and lastly speech. We went through several speech therapists through early intervention and privately, but there was something that wasn’t clicking. They were all wonderful, but none felt like the right fit and it seemed as though she wasn’t making any progress.

We finally went to Suburban Speech Center a few months after she turned 2-years-old, and an SLP diagnosed her with Apraxia. That made sense. We worked with a speech therapist specializing in apraxia, and we saw Rumi immediately make progress in her care. Rumi’s therapist was and is incredible.  She really took the time to get to know Rumi on every level. At the end of each session, she made sure to talk with me about what to work on and was a great support system for our whole family.

Rumi was also diagnosed with a rare genetic disorder called USP7 Hao Fountain Syndrome. There are only about 250 people known worldwide with the syndrome and turns out that 75% of the children have speech delays with a significant number of them having CAS.

Knowing all this information helped answer a lot of our questions and we kept doing what we knew was helping Rumi the most, which was therapy. Rumi had the most difficult time saying the second half of words. She loved eating pouches and would say “pou” for them but couldn’t say the ending “ch” with it. She would work on it in therapy weekly and we would do her speech homework every night as part of her bedtime routine. We would get her in her pajamas and go through her notebook and have her say these words over and over and over. At times she would get upset, but we knew this repetition was what she needed. We could see her working so hard, but at times it just wasn’t connecting for her. We knew how much she wanted to communicate clearly with us, and she would meltdown when we couldn’t understand what she was trying to tell us.

Her receptive language has always been on par with other kids her age, but her expressive language has been quite delayed, leading to a lot of frustration while she tried to effectively communicate her thoughts. At age 2.5 we enrolled her in a small coop school near us. We were so nervous. We didn’t know how she would do and if the teachers or kids would understand her. She was very quiet at first, as she didn’t have the proper language.  Because of that, we felt like she was shy and cautious with her peers who were quite chatty.  Also, we made sure to keep up with therapy during school or pull her out early to go to sessions, therefore she couldn’t attend every day like her friends. She never understood why, and it would be a struggle at times for her to leave playing to essentially go do work.

But She is at the same school and entered 4’s this fall and is thriving. The hard work has been paying off. She has many friends, including a best friend, and her teachers and the kids can understand her. She can converse and connect with them. She isn’t as frustrated and can better tell us what she needs and wants.

A few months ago, she also finally said POUCH! It didn’t sound perfect, but she put the two sounds together after trying for years and we are so proud of her.  The video at the end captures this amazing accomplishment!

It’s been a journey and often can feel lonely, but these kiddos and caregivers are amazing, and we have a wonderful community. I’ve learned to lean on the community and get support from them. Seeing other kids like mine grow and overcome similar obstacles helps a lot. Progress may come slowly, but finding the right therapist for your kid and sticking with the therapy will truly help. Your child will make progress even if it’s adding one new word to their vocabulary. I have learned to celebrate the inch stones, not milestones, no matter how small they seem. Because every word and sentence your kid says is important.

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